Wednesday 25th May, 2016
I spent much of the Thursday afternoon answering questions. I suppose this made a change from incessantly asking them. Now that they knew Marc had Strep A and his drugs had been altered accordingly, they wanted to know how he got it. This meant me attempting to deal with a barrage of queries about Marc's habits and his routine over the past few weeks. I found it quite frustrating that my answers didn't ever seem to satisfy the doctors and (to this day actually) we still don't know how Marc picked up the bacteria.
The questions ranged from the fairly mundane to the downright bizarre. I was asked things such as 'Has Marc been on holiday or a work trip anywhere recently? Where to?' The answer to this was simple: our last holiday had been to Disneyland Paris three months earlier, so hardly exotic, and the only work trip he had taken was to London. But then they asked me if Marc injected drugs, if he had been swimming in open water, if he could have come into contact with anyone who could have had Strep A, and if he had any open sores or wounds on his body. Mostly the answers I gave were negative: Marc and I are fairly ordinary people, we don't participate in any extreme sports which might have involved him swimming anywhere suspect, we don't travel anywhere particularly exotic and the idea of us injecting drugs would have been laughable under any other circumstances.
The nurses checked Marc for wounds or sores themselves and found that he did not have any. When I asked why, they told me they were trying to work out how the Strep A could have entered Marc's body - it had to have been ingested or entered through the site of an open wound. The problem was, it had taken so long to work out what was wrong, that any cuts or sores he might have had on his body would probably have healed by the time they went looking for them. Apparently it would only have taken a small scratch for the body to be 'open' enough for the bacteria to get in, but this was only half of the question.
The other half was how on earth Marc had come into contact with the Strep A in the first place. Like I said, this was a mystery we never solved, which is quite scary to consider. Marc had done nothing out of the ordinary: our family life is quite predictable and unsurprising. I had to try and answer the questions without feeling insulted to be quite honest, as they implied things about Marc which I sometime found upsetting. But the doctors and nurses assured me that they had to ask, and that they were simply trying to work out where the infection had originated from. I don't think we ever even got to the bottom of where it started: the stomach or the bowel.
There was also a theory at one point that Marc had perhaps been suffering from some kind of ordinary stomach bug which had masked the Strep A infection and worked as another red herring to lead medical staff away from a correct diagnosis. The sickness and diarrhoea he had been suffering from could have been caused by the Strep A infection, or something else, and perhaps only as he recovered from a stomach bug, did the underlying infection reveal itself. Either way, it's a sobering thought to consider. Marc acted completely normally, did nothing out of the ordinary, nothing risky, and the bug managed to get into his system anyway.
In addition to all the questions from the doctors in ITU, I was also called to the phone to speak to the Public Health department. This was also pretty terrifying. All hospitals are required to report any instances of Streptococcus A occurring in their premises to this government department: that's how serious the infection is. The man on the phone wanted to ask me all the same questions that the doctors had asked, and more frightening ones too. He asked about people Marc would have come into contact with since the illness had begun. Where had he been? Who had he seen?
Fear of contagion
This started a fresh terror in my mind, of whether the infection was contagious or not. Images of my fears that first night in the ITU waiting room crowded into my head again: could I have the same infection? Could the children? The man from Public Health said the staff at the hospital would print me out a checklist of symptoms, and that I had to keep a close eye on the entire family and anyone who Marc had been in contact with in the days leading up to the illness. If anyone of us showed the symptoms, particularly more than one, we were to come to the hospital or visit our GP immediately.
I was even asked about my children's schools. I began to feel quite guilty: could we have put others at risk? Had we acted irresponsibly? These thoughts were quickly followed by anger. No - we had not. Marc had been living an entirely ordinary life when he had been attacked by the Strep A. I had acted just as anyone who had a very sick relative would, taking them to a doctor, to the hospital. Why would I have prevented the children from going to school? No one had hinted that we might all be infected or instructed me to do keep them at home. But all the questions left me feeling uneasy.
Just a precaution
I asked if I needed to inform the school, fearing some kind of nightmarish scenario whereby the infection could potentially have been passed on to hundreds of people through my children, but the man did not seem that concerned. I presume the questions were just a precaution to cover all eventualities. Still, I came off the phone feeling a little like a criminal. Worried that I hadn't been able to give a satisfactory answer to the man's questions, and that Marc's illness might somehow have been our fault.
Looking at the list of symptoms, the main thing it seemed I needed to keep an eye on was if any of us had a temperature. My sister went immediately to buy me a proper thermometer, since I didn't own one at the time. The only people who were considered to be at risk were myself, the children and Marc's mum, since we were the only ones who had been in very close contact with Marc since the previous week. Luckily, his sickness had prevented him from going very far, so the only other people he had been near were anyone in the doctor's surgery on the two occasions we had been, and other than the doctor, Marc hadn't been particularly close to anyone in there. The most comforting thing, I suppose, was that if any of us did become ill, we would know instantly what it was and be able to treat it straight away.
As well as discovering the cause of Marc's illness, that Thursday was the day that the ITU staff began his diary. This is something which a lot of ITU departments use to track the progress of patients who may be in ITU for a significant length of time. It is filled in by the medical staff to chart what is happening to a patient in terms of their treatment and recovery, but also by family and friends who are visiting. Once the diary was in operation, I wrote in it every day, mostly with very little to say. There was absolutely nothing happening in my life for those few months, other than taking care of the children and visiting Marc. Somehow though, I managed to scribble a paragraph each time, writing about what the children had been doing at school, as well as what kind of progress Marc was making. I was often grateful for the distraction during those lengthy visiting hours: at least it gave me something to do.
The idea of the diary is so that patients can come to terms with what has happened to them during their time in ITU, later on when they are well again. Often in Intensive Care patients are sedated, in pain and on many different drugs, so they are not aware at all of what is going on around them. The ITU environment is strange enough to someone who is fully conscious and understands where they are, but to Marc, unaware of where he was or how he got there, I think ITU was a pretty terrifying place at times. The diary can help to fill in missing periods of time and allow patients to understand what was happening to them during their stay, and has been proven to help patients deal with the trauma afterwards.
Survival by no means certain
Knowing that they didn't start Marc's diary until the Thursday is another indication of how very sick Marc was. Clearly upon Marc's entrance to ITU, they didn't feel it appropriate to start a diary as he wasn't expected to survive for long enough to be able to read it. Despite what I had considered good news that day in the discovery of what was causing the infection, the medical entries for the diary those first few days state that Marc is 'very sick, unstable and in multi organ failure' and 'still deteriorating despite increased support'. The first time we were asked to write in it was 30th June, several days later, so again, this reinforces the idea that until several days into Marc's ITU stay, his survival was by no means certain.
The diary is quite factual. It states what is happening to Marc and what is being done to help him and is all written in second person, directed at Marc himself. 'The decision was made to sedate you so that you are not aware'; 'a tube has been inserted up your nose into your tummy so that we can keep your stomach empty and rest your gut'; 'you developed a fast, irregular heart rhythm and this was treated with medication'. It makes for difficult reading: when getting it out just now (for the first time in months) to write about it, I actually burst into tears. I'm certainly happy that we weren't having to read it at the time, but I'm glad that it was kept and that we have an accurate record of what was happening to Marc medically throughout his stay in ITU.
Hands I could trust
Aside from answering the many questions, the rest of Thursday was spent sitting by Marc's bedside again and I was glad to go home to the children late afternoon / early evening. Marc's nurse that day, Andrea, actually gave me a hug and told me to go home and 'cuddle those children'. I really felt how much she (and so many of the ITU staff) empathised with my situation, perhaps imagining themselves in a similar position and not knowing how they themselves would have coped with it. I appreciated her concern and knew I was leaving Marc in hands I could trust.
I went home and took both mine and the children's temperatures, which were normal. In fact, I spent the next fortnight taking the temperatures of everyone in the house, morning and night. In the end, none of us ever had anything like Strep A. That didn't stop me having the added worry that one of the children might suddenly come down with it. The thought that Daniel or Amy might become ill too was just to difficult to bear.